Antidotes for Pradaxa or Xarelto?

I've tried to find information on any progress in developing an antidote for Xarelto or Pradaxa. It seems to me that something was in the works late last year, but I cannot find any evidence that anything has been developed yet. Does anyone have any information on this -- I admit I am not the best researcher; not that I do not know how, but perhaps do not know where to look.

I am currently taking Nattokinase 3x daily and 4,000 mgs of Fish Oil, along with drinking lots of water. But, after a year of supplements, I am still in permanent, or chronic, afib. I am seeing an EP in the next couple of weeks (who I am sure will recommend an ablation, which I cannot afford). I have insurance, but it does not cover all of it; and since the crash in 2008 my husband and I have used most of our "reserve" trying to say afloat. Sad, since we are paying $1492 a month for insurance and cannot afford to go to the doctor!! Oh, well, another story. And I will be going on Medicare in June and I'm guessing ablations are not covered by medicare.

I'm getting more concerned (less optimistic!) because my heart rate seems to go up quite quickly when I am agitated or run up stairs, etc. and I feel tired more often -- maybe I am headed to heart failure due to the long standing afib (4 years). I'm pretty discouraged right now -- new for me, because I am very optimistic person and was sure all the supplementation would make a difference.

This post was prompted by a discussion with a doctor friend last night who said I was very unlikely to convert after being in afib for so long. (Ironically, it was me who turned him on to this site because he has occasional afib for which he takes Flecainide, but says that after starting magnesium he very rarely has an episode; and this happened very quickly for him.)

Sorry, I didn't mean to go on -- I guess I needed to. My question is -- am I playing with fire by not taking Pradaxa or Xarelto. I will not go back on Warfarin.

Louise

Louise, you are mistaken about Medicare not covering ablations. I was on Medicare when I had my ablation 2 years ago and it payed for most of it. The small amount remaining was paid for by my medigap insurance. Usually all that is required is that you have failed an antiarrhythmic drug before seeking an ablation. I tried propafenone for a short time without result and went straight to ablation. Actually, when on Medicare, is probably one of the best times to have an ablation.

Jim



Edited 1 time(s). Last edit at 04/16/2014 11:36AM by mailman52.

Louise,
Medicare does pay 80% of ablation and your secondary insurance will more than likely pay a large portion of the balance. I had an ablation in January of this year and between Medicare and my secondary insurance, I didn't owe anything out of pocket for my ablation. I have been on Coumadin for seven years and do not have a problem with it. I don't want to change to anything else until they do have an antidote such as vitamin K is for Coumadin, plus I like being able to check my INR to see if I am in range. I've had friends who switched to some of the other blood thinners, but had to switch back to Coumadin because of problems encountered with other blood thinners. Everyone has different tolerances, so you can't know until you try it for yourself.

I can't address Nattokinase because I've never tried it, but my own personal opinion would be to stick with a prescription blood thinner if I was in permanent afib.

Thank you Jim and Jean. Both of your posts are most encouraging!

Louise,
The following website modified 3/7/14 indicates there are no anitdotes yet for Pradaxa and Xarelto. Hope this helps.

[www.drugwatch.com]

Jean



Edited 2 time(s). Last edit at 04/16/2014 02:13PM by Jean.

Hi Louise,

Nattokinase can be used with Warfarin under a knowledgeable Cardio or GP who understands how to combine both safely while using home INR monitoring which is an effective way to screen INR and keep things relatively safe..

But with 4 years of persistent AFIB, I'd be a bit uncomfortable depending only on Nattokinase for protection! The 4 grams of fish oil may well help some too with 300mg of Nattokinase in divided doses

Your trust and expectations that the supplements alone were likely to stop your long standing persistent AFIB, were, Im sad to say, not so realistic. They can certainly help your heart and can help keep rates a bit lower and improve blood flow characteristics for such a long term persistent afibber, but only very rarely do we see true 24/7 multi-year persistent afibbers successfully stop AFIB just with the nutrient protocols, and Im sorry if you got that impression here.

There have been a small few cases with persistent AFIB who have gotten major reductions in episodes with long periods of quiet in between outbreaks, but even those are the exception here rather than the rule.

A person like you would have been better served after 6 months of doing heroic efforts with the diet and supplements and assuming you still had not make a major reduction in your episodes, then you should have for sure gone for an ablation sooner, but only by a highly skilled persistent AFIB specialist.

And PLEASE don't just go to any locally available EP that someone or some other doctor might refer you too from the area near where you live as the main criteria for selection, for a case like yours Louise!! This is the single most important point I can make to you at this stage in light of your multi-year long standing persistent AFIB.

And for sure, Medicare will pay for an ablation. They paid for both of mine.

Sorry for your troubles with the beast and do continue on with your supplement routine as it can very much help support a likely need ablation in the coming months or hopefully by years end to try to grant you some solid degree of real freedom.

But I can't urge you enough to go for the very best and most experienced persistent AFIB ablationist you can arrange for yourself. It looks like Medicare may well become a big blessing for you as well!

Best wishes Louise!
Shannon

Hi, Louise! Hope you're doing well.

Regarding anticoagulation: Don't think you mentioned anything about your CHADS score (except that maybe you're almost 65 yo).

Do you know what your score is?

/L

HI Louise - I had a phone conversation with Dr. Natale yesterday, who was following up on my recent TEE results. I had my ablation last September, and needed to go on a blood thinner, due to the extensive ablation that was needed in my LAA. I was hoping to get off of the blood thinner, but can't do that yet...I did express my concern to Dr. Natale about being on Xarelto because of its lack of an antidote, and he said that it wasn't really a big concern unless you had a major accident. He indicated that they have the similiar issues with Coumadin too...and they would have difficulty if someone was on that and had a major bleed. In other words, in his opinion, he felt Xarelto was not a big concern overall and not any more of a concern than Coumadin. I have been taking it since September, and seem to be tolerating it well. Not loving being on a blood thinner in the first place, but I'd much rather take 1 pill with dinner and not have to worry about what I eat and also my having to get my blood tested regularly....just me opinion and experience.

Barb

Thank you ALL so much. Yes, Shannon, I'm afraid I was "determined to beat this" and not very realistic. My experience with doctors has been so negative since I was diagnosed with afib I guess I wanted to do it without them! My appointment will be at the UCLA Clinic of Cardiac Electrophysiology. I don't know which doctor yet, so if anyone is familiar and knows anyone there, please let me know.

I was on Pradaxa and didn't have any problems with it, so I've just called my pharmacy and reinstated my prescription, which I will start taking tomorrow. I am basically starting over in a way. The last cardiologist (and the one before him) had me on Multaq, which, if you read about it IS NOT for someone who is in permanent afib; but rather someone who has been converted to prevent a relaps -- and in fact can be fatal to someone like me. Not very comforting that they are supposed to be taking care of me! I quit taking it months ago and haven't been on any other medication since.

So, I will see what they say and report back for your opinions, which I value soooooo much! Thank you all again.

Louise

Louise - you may want to check on the Pradaxa...it seems to be that both Xarelto and Eliquis are favored over that. I'm not sure just why, but I know Shannon is quite negatie about Pradaxa...and Dr. Natale doesn't seem to like it either.

Sorry..don't shoot the messenger ~ Barb

Don't worry about getting shot Barb -- I actually agree with you! The only reason I'm going back on Pradaxa starting tonight is because I have a prescription that I put on hold and I can get it immediately. When I go to the EP I am going to ask for Xarelto. Although I have been relying on nattokinase for nearly a year, I had "sudden fear" after my discussion with my doctor friend the other night and want to get back on an anticoagulant today.

I took the natto last night but will not take it this morning or mid-day and start the Pradaxa this evening.

Louise

Hi Louise, if you are set on UCLA then ask for Dr Shivkumar if your only choice is solely UCLA Louise. He is an outstanding ventricular tachycardia ablationist and knows Dr Natale well. Im less sure of his direct AFIB ablation experience, and am not sure of his experince level with long standing persistent AFIB, but have heard he is very good ablationist in general.

However, for someone in your shoes with a history of prolonged persistent AFIB, you would be extremely wise to as least go consult with Dr Natale on this one first and foremost, as he specializes in cases just like yours and is recognized world-wide as the best with such challenging cases.

Unless you have a seriously compelling reason why you just cant travel to either Scripps in La Jolla or San Francisco , or even to his main office in Austin Texas to see Dr Natale himself, Id make that your number one priority with a bullet and a gold star if I was in your shoes ... which I have been at one point more or less... and no longer am.

One of the best ways to turn the tide on a history of having bad or unfortunate experiences with doctors and the medical profession, is in taking the time and making the commitment to yourself to make the very best decision you can when it come to selecting just who to trust your heart too. Don't pick a place mainly because of its overall name or reputation as a center, whatever you do!

And not having any idea up front what EP you might get at UCLA .. or at almost any medical center that does ablations for that matter ... is, quite frankly, a highly risky proposition I will tell you straight up Louise! Please do not do that and go in more or less blind like that.

One of the main reasons for sites like ours is so we can help spare those who are lucky enough to find our site yet another possible unfortunate medical experience, if at all possible, based on the long collective experience of so many of us.

Please make the choice for a specific ablationist you have researched enough to feel fully confident in their history, skill and experience in ablating long standing persistent AFIB. You will find fairly quickly that particular list is very short indeed with Dr N at the very top of it, to help save you some time and a lot of leg work.

Getting the best long term results with cases like yours truly requires the most experienced ablationists around and those that focus mostly on such challenging cases. Then you can be best assured of a great outcome over a one to two ablation process if you start with the right person to begin with.

Anyway, Louise, Im in Amsterdam at the moment and quite busy, but if you wish to speak on all this when I get back home and settled in, in 12 days or so, we could arrange that if you'd like.

This is nothing against UCLA per se, I just want to caution you and any others here, not to make a choice based first and foremost on a given center and only secondarily the man or woman who would be controlling the catheters. That is the opposite priority for the best odds for a safe and effective ablation process, especially for cases like yours may well be.

I'm sure some others here will chime in as well, in light of your 4 years of persistent AFIB with similar cautions about going to a possible relative unknown .. or not even knowing for sure who it might be that would be doing your procedure at a given center. No matter how prestigious the name of the medical center has been overall and in general. Take care Louise.

And all the best,
Shannon

Thank you, Shannon. I'm not planning a specific time for an ablation at this time. I will be going to UCLA because that is what my insurance dictates at this time. I have never seen ANY EP before, just cardiologists. So I want to get a "consultation" and see what they might recommend first as possible medication just to somewhat regulate my heart rate right now, get an echo cardiogram and possibly an echo stress test. In other words I am basically starting over. I am going on a referral from my PP, but I will request Dr. Shivkumar if I can.

I have this insurance until June 1 when I will go on Medicare and I certainly will not have an ablation before then. At that time I will have to research and plan more. If Dr. Natale takes medicare I would try to see him in La Jolla, which is driving distance from my home (about 2 hours) in Santa Monica.

If any of you who had your ablation after you were on medicare, and happen to be anywhere in Southern California, please give me your recommendations. Thank you.

Louise

I checked and Dr. Natale does take Medicare; however, neither of the plans that Scripps takes are available in my area. Since I am now accepting the fact that I will need an ablation (preferably within the next year) I am now needing to research the very best in my area. For many reasons it is, unfortunately, not possible for me to travel to anywhere very far to get the ablation -- I suppose I could drive to San Francisco, since I have relatives I could stay with for a day or 2 before driving back (actually my husband would be driving). Is that feasible as far as recovery goes? I haven't checked to see what Medicare plans the San Francisco facility takes. Since I am just about to sign up for Medicare supplements I would choose a plan that Dr. Natale takes even if the premiums are a little higher. I can probably switch later.

SO, in case it doesn't work out that I can find a plan that Natale takes, I am asking, as I begin my research, for any "strong" recommendations in the Southern California area. Even if the ablation isn't immediate, I now realize I must choose a Medicare plan rather quickly and would like the plan to match the doctor! Thank you very much!!

Louise

Louise, I'm not sure what you are referring to when you say choose a Medicare plan. So far as I know Medicare only has one plan and in my experience is not restrictive in the doctors you choose as long as the doctor accepts Medicare. Should you go with one of the Medicare Advantage plans, yes they have many restrictions and cover a limited amount of doctors and under Obamacare are going through some changes. I would recommend sticking with the original Medicare, allowing you to select the doctor of your choice if they are accepting Medicare.

Jean

Hi Louise,

Absolutely Dr Natale takes Medicare which paid fir both of my ablations plus my Lariat procedure with him in both Texas and San Francisco.

I'd recommend you go to San Fran or Austin and please listen to me when I tell you supportively and with all positive intention that I STRONGLY urge you not to make this decision as out your ablationist based on conveniences any way shape or form! Traveling for three or even four days to San Fran if you can at all afford a hotel... The Kabuku hotel gives discounts fir CPMC patients and their spouses.

If you had a simple paroxysmal case of shorter duration and not too frequent episodes I wouldn't be so strict with you, but thinking San Fran is too far to have access the best ablationist in the world for specifically your challenging type of AFIB because it might be a little inconvenient having to stay in a hotel or impose on family or friends for a few days is just the kind of thought process that is so common when people are making medical decisions that so often wind up getting them in trouble. Especially when it comes to choosing a long standing persistent AFIB ablationist! I flew from Amsterdam Netherlands to San Fran to consult with Dr an and run returned to Austin from Europe 4 months later to get my challenging persistent AFIB process started properly under Natale's hands and it was one of the best decisions of my life ranked right after my asking my sweetheart Magdalena to marry me.

I know its easy to assume that most EPs will be more or less similarly skilled and especially at a big name medical center like UCLA ... But when it comes to AFIB ablation and in particular persistent AF ablationists that natural assumption is, alas, dead wrong and is a very dangerous assumption to boot!

Yes, you can get lucky at times, but using 'convenience' as a key decision variable, such as not wanting to be bothered with the driving time to San Fran and hassles of a hotel ( all of which are typically much less a real world burden than our minds project they might be in advance) so let's see who else 'might' be able to pull off a decent job in my neighborhood makes me shudder to think about it.

I just want to impress upon you in any way I can Louise to not take any short cuts here on this single most important decision for the health of your heart and for your greatest peace of mind during the process from where you are now to regaining a durable experience of NSR as you new norm again in the quickest and safest possible way for yourself.

Please understand I don't blame you for wanting to find a decent doc in your local area, and that's important too, but it's far better in this case to start at the top and partner with a man like Dr N to guide your ablation process and then let them refer you to an every day follow EP in the Los Angeles area to follow you and with whom they work with frequently. Dr Shivkumar may well be an excellent choice there , or another colleague Natale's office works with in the area.

Since you don't have an EP yet at all and are depending on a referral from your PP ... And that's a real roll of the dice right there as you are far more likely to get referred to a local EP once again who may or may not be familiar with the wider universe of most skilled long standing persistent AF ablationist, and is just as likely to try you funnel you to an ablationist in his plan or med center, or perhaps in the regional area, that he thinks ' should be good enough for you'.

Anyway Louise, please consider all that I've shared here with you in the one hope and wish that you have the smoothest and most successful medical experience and outcome of your life here. Just look at the number of people on this sure who have made a similar decision and continuously write in their gratitude at having done so. The more long standing one's persistent AFIB has been, the narrower is one's margin for error in making the right choice , so why roll the dice at all when literally one of best, if not the very best such persistent ablationist practices right in you're very own state!?

Take care,
Shannon



Edited 2 time(s). Last edit at 04/18/2014 02:50PM by Shannon.

Hi Shannon,

I so appreciate your dedication and concern and I am listening to everything you say. I was only going to the UCLA appointment because it is under my insurance at this time and I was kind of anxious to get an echo cardiogram and echo stress test to see how much "worse" I was from last year. I IN NO WAY have made any decision to have an ablation there and am, right now, looking at medicare plans that cover Dr. Natale in San Francisco as my supplemental plans starting in June.

The information I get at UCLA is just something I would take to (hopefully) Dr. Natale. It is not the inconvenience of going to S.F. but more the financial burden. We are struggling day to day here just paying our mortgage, etc. because of several setbacks since 2008, so that is why I'm waiting to go on medicare to visit Dr. Natale (or any other EP) regarding an ablation. My husband and I both still work and will have to continue, so there is more I have to consider. I definitely won't go to "just anyone." If I get any recommendations I will certainly mention them here for feedback and research them myself.

Knowing that Dr. Natale is your #1 choice, is there anyone else in this area that you have ANY faith in at all? I think anyone on this web site would certainly prefer Dr. Natale, but I don't know that he is an option for everyone.

Thank you again,

Louise

Hi Louise,

Thats certainly fine getting your Echo and general heart work done at your local center. Im just suggesting to let your existing cardio do those tests to at least take to Dr N for a consult of one afternoon to get your best options laid out for you by one of the true experts in the world in your type of AFIB instead of trying to set up with an unknown EP at this point who may give advice not necessarily in your best interest as far as steering your toward an ablationist with relatively little experience successfully addressing long standing persistent AFIB cases.

So Im glad to hear that is your plan. And I do understand the financial constraints, but please try to see what you can do with your family or friends in the bay area to help you and your husband out for maybe four days all total and one night of which will be in the hospital. You can get a private room there that your husband can stay in too for that night if he and you wish.

The thing is once your Medicare is set, and Jean is right, just go with Medicare plus a thorough gap coverage plan on top for probably the two year period needed to confirm whether or not you might need a main index ablation followed by a touch up within a year of the first one to make sure you are done and in good shape. Then you can reduced to regular Medicare alone going forward if you wish and is easier financially. Its not that much more for a top level gap coverage plan for one or two years and its well worth doing when you know you will need a full ablation process very soon .. the sooner the better frankly and Im so glad you get your Medicare in June!! that is great news.

I wish you could have gotten the ablation two years ago, but there is no time like the present to strike while the iron is hot.

The thing about recommending anyone else in California for a long standing persistent case, is that the couple that come to mind that would be decent but definitely not on the same level of Natale himself, would have the same constraints for you in terms of distance and such as Natale would. Plus, don't just assume you can't get approval from Medicare at Scripps for an ablation, I don't think that is true. I bet you could work it out with a good phone call to Dr N's assistant at Scripps.. certainly worth a try of sure.

In any event, please exhaust every possible option after doing everything in you and your husband's collective power to make at least a consult with Dr Natale happen, for a case like yours, in either San Fran or Scripps. Then, only if, and when, there arises some insurmountable barriers that make that option impossible. we can definitely revisit the other possibilities and discuss it over the phone as well.

It may be more productive for to you focus your efforts right now, at least while waiting anyway for Medicare to kick in, to assume that Dr N is the only one on the planet for you as I suspect that is the best approach for inspiring creative ways to make it happen for yourself than if you assume you have an 'almost as good' fall back around the corner, in which case, its only human nature not to go the extra mile to make it happen with the superior option and its too tempting to give in at the slightest appearance of a hassle or minor issue.

We can discuss 'Plan B' when the time comes, but for now try thinking positive for 'Plan A' and don't take an initial road block or seeming difficulty as a definite 'no way' until you confirm that is true. I'll be willing to bet with that focus and attention, that the stars will seem to align and a few rays of light may break in your favor, such that no real compromise may be necessary for you with such an important decision, and likely all without breaking your bank at all. Its is very much worth making it a big priority.

Cheers!
Shannon



Edited 2 time(s). Last edit at 04/20/2014 03:30AM by Shannon.

Hi Louise,

I am on Xarelto and have been for the last year with zero issues. Making the decision to be on a blood thinner IS a big deal. But with my previous condition (more about that in a moment) of persistent 24/7 a-fib I decided the chances of having a stroke were much greater than me being in a serious car accident or cutting myself with yard work or a kitchen knife. An acquaintance I know named David has a history of a-fib and he DID have a stroke a couple of years back before his ablation. It seems that he had gone out to lunch with several friends on a rainy afternoon, and David being a gentleman and good guy walked each of his friends to their cars with his umbrella. When the last of his friends drove away he continued to his car. Suddenly he felt very unwell, and while he managed to start to get into his car, he could not move his left leg or left arm at all. Half of David was stuck outside his car as he could only just sit on the edge of his seat with the car door still open, in the pouring rain. The restaurant parking lot was mostly empty since it was a weekday in the mid afternoon. He sat there for several minutes in confusion and finally his cell phone rang. It was his wife calling, as he was late picking her up. She told me that at first she thought David was drunk when he attempted to talk to her, she eventually realized something was horribly wrong. Long story short, they quickly got David in the short time available to one of the only hospitals in Los Angeles County where there was a neurological surgeon standing by and were able to actually vacuum the clot out of his brain before major brain damage set in! A sobering story to be sure! David is fine today, he went on some months later to have an ablation and you would never guess he had that disturbing medical event in his past. He truly dodged a bullet that day.

I had a chance to tell that story to my own personal doctor. He shared with me that one of his other patients had not been heard for several days by friends and family, and finally one of his friends eventually broke into the house to do perform a welfare check on this person. They found him on the floor, he had a stroke and laid there since, for at least a day or two, but since the 'golden time' for intervention had past he is unfortunately mostly paralyzed from the event.

You can imagine why I am sold on taking my Xarelto! I never miss! From what I understand strokes from a-fib are especially bad.

As far as EP's go, I visited three before eventually going with Dr. Natale at his San Francisco location. It sounds like you may live in the Southern California area, I went to one at Cedars Sinai, one affiliated with Huntington Memorial in Pasadena, and one in Ventura County. All of them were not optimistic about my situation, the one at Cedars started out at my first visit giving general stats like "70% chance of success with one procedure, 80% after two" but after reviewing my EKG, ultrasound, and history at the next visit started walking back those numbers, and finally at the third visit he said 50/50 at best. The EP in Pasadena started out at the first visit saying "not everyone needs an ablation", and wanted to "manage" my a-fib "together". I finally came to the conclusion that either their skills were not the best, as I had heard of much better numbers from the many patients of Dr. Natale, or that they really didn't want to take a chance with my persistent a-fib case.

Eventually since I had heard of Dr. Natale on three different message boards referred to being the "gold standard" EP, I made an appt. It took a few months to get the date for the consult, and another few months to get my ablation. It's now been four months since my ablation, and I have been in perfect sinus rhythm ever since the procedure. If money is tight you especially will not want multiple procedures, if anyone on this planet can get your procedure done in one procedure, it's Dr. Andrea Natale.

And I did find this comment about the EP program at UCLA that gave me pause...
------------------------------
[www.afibbers.org]
"One last comment. I did talk to an EP at UCLA, prior to my ablation by Dr. Nademanee, and as of 11/2012 they were still doing the pulmonary vein isolation to start with, and then if that proved not to end the suffering, they would drag the patient back into their lab and have at them again. I ran not walked out of that consultation."
-------------------------------

Take good care, Neil

Thanks for your experience Neil,

It's good to reinforce the reality of the situation and particularly for folks who have long standing persistent AFIB. There is a huge gulf between otherwise good and decent paroxysmal AFIB ablationists, or which there are a pretty good number now, and those very few who one would want on their short list for persistent AFIB.. especially when the persistence has gone on for over one year straight 24/7.

The point isn't that there is no one else that can possibly do a good job with persistent AFIB, but that the list is very much smaller and with the challenges involved, it really pays big time to go out of one's way, if necessary, to put themselves under the care of the most experienced and consistently successful overall ablationist and particularly so for persistent, that one can have any kind of reasonable access too.


It is possible to get a good result from someone with less experience than Dr Natale, but its increasingly a crap shoot the further down the experience and success ladder you wind up willing to compromise too. The issue often becomes then, how many ablations will it take to get the job more or less done is a pretty good fashion. But with so many EPs still not addressing the LAA much at all, or if so mainly only with focal LAA burns as an endpoint which simply does not work very consistently for very long, then your odds are higher of getting sucked into a kind of 'ablation creep' with an repetitive piece-meal ablations process winding up happening before a reasonable degree of stable NSR is achieved.

With a elite expert like Dr Natale doing these more difficult procedures increasingly even these are being 'one and done' though one plus a touch up is more likely still and much more rarely a second touch up, for three all together, are only very occasionally required to buy a consistent freedom from AFIB/Flutter for the long haul.

That combined with the major reduction in risk of complications are well worth bending over backwards to achieve, if need be. Most often though, what seems up front to the person like it might be an insurmountable hassle to leave their regional area for a short while, turns out in reality to be much less of a burden than they presumed once looking back in hindsight after their procedure is all over and they are enjoying unbroken NSR again. Once the insurance issue is worked out the rest typically falls in place rather easily.

Shannon

Thank you Neil and Shannon so much! Yes, Neil, I have also come to the conclusion that my chances of stroke are greater than a major accident. Your story certainly reinforces my decision.

I believe I have made some "rose colored glasses" decisions because my afib has never been debilitating or even very noticeable. I have never been to the emergency room and have never had to stay home or anything because of it. Because of that, and reading a report here that people with lone afib don't have more of a chance of a stroke than a person without it, I decided that if I could take nattokinase instead of medicine I would be better off. It's only because I seem to be having more PACs and PVCs that I decided with more activity there may be more of a chance of stroke.

I thought that since it was so "liveable," I could just live with it forever, but I am now afraid of it leading to heart failure, etc.

It's hard to describe our life and how it has so drastically changed in the past few years, from having plenty of reserve money and income to being almost broke. Too bad I didn't get afib 10 years ago!! Haha! A trip to S.F. would have been nothing. My husband had eye surgery in November 2009 (he lost one eye as a child and has had multiple surgeries on the other) and went blind for 2 months and we weren't sure he would see again. Of course he couldn't work, medical bills even with insurance, etc., etc. and we never recovered financially. He was very successful for 30 years in the auto accessory business and the car business died after the crash and never really came back. We also had a manufacturing business for 11 years and had to close it in 2006. My computer skills were basically whatever we needed for the business and there was no job market for me. I started a pet sitting business which I still have, but that is not a "supportive" business as you may guess! He thankfully CAN see and is now a car broker, but we don't really have a steady income and are already getting help from relatives. A drastic "come down" for us!

My afib started in January 2010 so it may have been stress that instigated it. Who knows? Anyway, I am up at 2:00 a.m typing this and cry a good part of every day -- not saying this for sympathy, which I hate, but to emphasize that I do not take any of this lightly. I try very hard not to get overwhelmed as I have seen things "fall into place" many times in my life in a rather miraculous way. I am basically an optimistic person and believe everything happens for a reason, including finding this site and all of you!

I went from thinking I could live with this to realization that I need an ablation rather quickly so it is daunting, but I am trying to think "one phone call at at time" to get through it. I do think anyone other than Natale would be a crap shoot -- so I am with you on that -- I have been reading about him here for over a year; just need to believe I can make it happen. I will call Scripps on Monday and tell them I am about to go on medicare and see if there is some plan I can get on that will get me there. I am actually terrified of an ablation, so don't think I will just take the first opportunity to get it done by anyone!

Well, time to go back to bed. I guess when mental purging starts in the middle of the night it turns into group therapy! Thanks for "listening!"

Gratefully, Louise

I had a stroke (TIA) 19 months ago while going in and out of AFIB labor day weekend. Couldn't speak for about 10-15 minutes after typing gibberish on my computer screen for who knows how long. Saved that email and should post it one day to remind everyone that playing with natural supplements is no joking matter when it comes to afib and stroke.
It was surreal as I was totally lucid put could not answer the questions my two bosses were asking me. Just a dumb smile on my face and lots of head nodding is all I could muster to try to communicate when all of a sudden I started blabbing rank, name and serial # etc........

At 11 months after the Maestro ablated me and afib free but still staying on Xarelto.

McHale



Edited 1 time(s). Last edit at 04/19/2014 10:49PM by McHale.

McHale, thank you. When I had first discovered this site, my doctors had failed to give me any confidence in their attitude and treatment of my afib. I saw The Strategy and was determined to "do it myself!" There was never any real interference with my lifestyle having afib, so I thought I could at least keep it the same forever!

Anyway, it hasn't really changed. I think there may be more PACs and PVCs and that's what lead me to return to Pradaxa from nattokinase and your story just confirms that I was probably playing with fire. I now realize I will never rid myself of it without an ablation, so I don't know if the PACs and PVCs are from anxiety or vice versa, but...

Shannon -- I am a little slow on the uptake. As each day goes by and I re-read some of the posts, my thinking changes. After reading Neil's reference to UCLA and my experience with their doctors, I don't think I will make an appointment with an EP there. My medicare starts in June and I will wait until I get my supplemental insurance and start from there. I guess I thought I needed something to take to Natale (or whomever), but they will surely do echos, etc. themselves.

My plan is to contact Natale's office at Scripps to see if there is a plan I can get on that will allow me to see him. My question to you now is, after reading about Dr. Nadamenee at White Memorial, would you recommend him? I know location cannot be my only criteria (if it was, I'd go to UCLA!), but White is only 17 miles from my home, so for pre and post ablation visits it would certainly cut down on my anxiety.

I must admit I do not have the intelligence or patience for detail to read about the different medical techniques -- indeed, the terms discussed would require a look at my phone dictionary every other word -- and I do rely on the conclusions drawn here by those of you more educated about it than I!

Thank you all, and I look forward in a few months to one of the people posting "My Ablation Recovery!"

Louise

Hi Louise,

First of all, there is no reason to feel badly in any way about how you have approached all this It made sense to try to address this in a natural way while also getting connected with a top tier ablationist. You may have been relatively protected with your nattokinase and other nutritional methods these last couple years, but I would not recommend that approach alone for someone with on-going long-standing persistent AFIB. I'd stay away from Pradaxa too and go with Eliquis or Xeralto if Coumadin is not to your liking from now until you get this thing licked, and then hopefully you might be able to come off the blood thinner .. one way or another.

Cheers!
Shannon



Edited 2 time(s). Last edit at 04/21/2014 03:21PM by Shannon.

Louise, just a thought: if you are willing/able to pay out of pocket for one outpatient visit with Dr. Natale at Scripps, you might be able to arrange it sooner than later while you sort out insurance issues. I did that last fall with Dr. Natale in Austin. I did a self-pay for the pre-surgical consultation which included EKG, nurse consultation, and Dr. Natale interview. Total cost was $250. A somewhat big bite but got a lot of bang for my buck. Then I proceeded with my ablation this past January in Austin and by then I had changed options within my health insurance to make the ablation covered and much more affordable. Don't know how much Scripps would charge for a visit with Dr. Natale on self-pay (you can ask)...I do know it costs a little more than $250 to see him at Sutter CalPacMedCenter in San Francisco. Anyway, just a thought. Clinics are happy to receive cash! I even asked for a discount at Austin and they knocked off 5% just for asking...I guess 'cuz I offered to pay cash for the one outpatient visit.

Thank you for that, Randy! I'm considering all options at this point!

Louise

YIPPEE! I have been in touch with our insurance agent, who had suggested supplemental plans for me to sign up with before I was planning an ablation. He has assured me that since Scripps La Jolla is contracted with Medicare, any supplemental policy with cover the balance, since it is not the supplement they "take," but rather Medicare is the primary policy. He assures me I will be covered if I enroll int he supplemental policy he had already suggested.

SOOOO, I will wait until June when my medicare kicks in and then make an appointment with Dr. Natale. I know it won't be immediately since he is so busy, but just knowing I will be able to see him is a HUGE relief.

While I am talking about it, I want to make a plug for our insurance agent, who has been amazing with our corporate insurance, advice, etc. for a few years now. If you are in California (or maybe even not) you might want to contact him if you have any problems with insurance.

Mike Kenney, CLU
CA Lic. # 0688916
516 Phlox Court
Thousand Oaks, CA 91360

www.kenneyins.com

Phone (805) 497-7407
Fax (805) 494-1363



Edited 1 time(s). Last edit at 04/21/2014 02:36PM by Louise.

Yep Louise, things can often work out a lot better than we might have feared at first blush. Glad you got some good information regarding Medicare and Supplemental Medicare.

Shannon

Hi Louise,
I was almost sure you could get supplemental insurance that would cover the balance or a large majority of the balance for your ablation. Since it takes a long time to get an appointment with Dr. Natale, you might want to consider getting on his schedule now. It really is only a little over a month until June will be here. Good luck to you.

Jean

Thank you, Jean. Good idea!

Hi Louise,

When I called to make an appt. with Dr. Natale at his San Francisco location I called in June of last year. The first available consult was in September. At that date the first available ablation slot was December 18th. So, you may want to call now, even if it's before you are on Medicare. Also, from what I understand that since Dr. Natale spends the most time in Austin (by far), followed by San Francisco, then only occasionally at Scripps it takes different amounts of time to get appt. slots at the different locations.

Also, for Xarelto I would be remiss if I didn't mention the Xarelto Carepath program, where you can join (for free) and get Xarelto for a $10 copay with most insurances. Normally on my insurance Xarelto would be the highest co-pay of $65, and of course about $400, give or take, without insurance. Here is a link... [www.xareltocarepath.com] Basically what I did was get on Xarelto and get stable so I didn't end up like my friend David I wrote about above, and hang out until my time for the ablation. Like you, I was in 24-7 a-fib.

And please have no fear about the ablation itself. The only sharp physical pain I EVER felt in the entire process was when they removed the urinary catheter a few hours after the procedure. For a few days after that, the recovery itself felt rather like flu symptoms for the lack of a better explanation, general malaise, aches, very tired, etc. Never any acute pain at all. And Dr. Natale's staff is the best! You will receive compassionate care from everyone top to bottom.

Take good care, Neil

Thank you all again! I have not been on the Forum for a week (very unusual because it is usually part of my daily routine -- life just got crazy!) If I have not thanked each of you for your input, please take it now. I just re-read all of the posts.

I have now had my PP call in a prescription for Xeralto and will get off Pradaxa as soon as I pick it up. I did get a discount card, so my cost will be $10 with my current insurance.

I have also contacted Dr. Natale's office at Scripps in La Jolla. They have asked for my medical records before they will schedule a consultation, so I do not have an appointment yet. Given what you all have said about his schedule, I may not be seeing Natale until later in the summer. Since my 24/7 afib does not interfere with normal life activities (no running, etc., but I gave that up after back surgery in 2006 anyway!) I am just glad to have started the procedure. I could probably live this way forever were it not for the possible "structural remodeling," causing further heart issues.

We are truly blessed to have each other for support and I will count on all of you when my ablation comes near!!

Best to you all,
Louise